Monday, July 28, 2014
YES, that's a title in all caps because I am so excited to announce McKenna is finally making progress. October 2013 marked two years of no improvement to the formula feeds. By improvement I mean no decrease to her tube feeds. We saw her GI in January 2014 and he told us to attempt slow tube decreases on our own and if she doesn't gain weight then just increase her formula to previous quantity. He also told us to attempt decreasing her meds (ones to prevent retching) and if she starts having problems then just start the meds back up. He made it sound so simple and easy, but with the road we have traveled the past five years we know better then that. We started in February decreasing one of her meds that has the worst side effects with possible heart issues. We were able to decrease it by 1/4 but haven't been able to decrease it any more due to coughing with the decrease. We will decrease that med more as her formula feeds decrease or stop. April we did our first SUCCESSFUL tube decrease in 30 months. We were able to bring her down from 1 1/2 boxes of formula to receiving only one box of formula. She did it. She maintained weight and even gained weight. She didn't appear to have any positive side effects, but it sure did effect mommy in a positive way. It was a great reminder that God is watching over us and He still is in control. July 3 we did another formula decrease and today McKenna is only receiving half of a box of formula (approx 13% daily caloric needs). This is amazing and such a big step for McKenna and our family! She will remain at this quantity for another few months. The twins start school in August and we need to see that McKenna can gain weight while at this quantity and while attending school before we will attempt the final formula decrease. McKenna can't use her feeding tube for three months minimum before the doctors will take the feeding button out. While we are doing well on formula, we do still need her to drink too. She is about 70% fluid fed through tube still each night. Mommy's timeline is never what God's is (hahhaha) but our goal, if McKenna gains weight, will be: October final formula decrease November attempt to quit the meds November work on fluid decrease through tube We are so grateful for those that have continued to pray for our micro preemies over the past five years, and for all that have jumped on board with prayers along the way. We are blessed beyond measure and so grateful for every blessing God has give this family and can't wait to see how He uses McKenna and Keaton's stories to change the world. Thanks prayer warriors!
It is so amazing to see the progress the children make weekly with swimming and gymnastics. Due to the weather being cooler and our pool not heated, they have only had two swim lessons this summer. Keaton aced the first lesson and did even better the second one. He struggles to listen and to follow direction. He loves to lead and often it gets him into trouble to not wait and find out the task. Swim lessons is no exception for him. He kept going under water when the coach was trying to instruct him, or blowing bubbles and kicking instead of listening. He managed to make it through the full thirty minutes though and the second lesson she worked on Keaton floating on his back. Mainly though she works on getting him to breathe right and do big arm strokes. McKenna didn't cry once during her second swim lesson. I am so proud of her as this is a huge improvement from a few weeks prior. She is now standing on the bottom step in the big pool and even walking on it. The coach was able to get McKenna to get swim toys off the bottom step of the pool even. She worked on arm strokes and breathing with McKenna, which is so much further then I thought she was able to get this year. Gymnastics Keaton is doing flips on bars, with help of course, and running on the balance beams, and doing cartwheels, and summersaults and all kinds of activities. Again he struggles to listen. He races through the steps so he can be first in line, first complete the task or just so he can yell out, "I won." I love his competitive spirit but will for sure struggle getting him to concentrate and follow through. McKenna hasn't been crying at gymnastics lately and participates in all areas, although she doesn't do all the steps. This week on the bars she got up on the smaller bar and stood to swing on the higher bar. This is HUGE for McKenna! She can't do flips on bars because her feeding button but she can still swing on them. She does the trampoline well as long as it is not a seat-drop. Two weeks ago she finally started doing the balance beams without any help. She still only does it sideways and won't walk on them one foot in front of the other, and it takes her forever to cross the beam, but she does it.
Can't believe after five years of sleeping at home with us, the kids slept at grandma and grandpa's house for the first time. Keaton has had the opportunities to sleep there or hang out there alone with all of McKenna's hospital stays, but McKenna has never been away from mommy overnight since NICU. They did great. They played the iPads and WII, and ate and loved staying with grandparents. McKenna didn't have her feeding tube all night, so she was pretty dehydrated and very bloated the following day, but that's a small price to pay for such a great memory. Daddy and mommy went to get massages and ate at Dublin Pass - yummy irish food. It was nice to spend some quality time together and get to do whatever we wanted for a night. Grandma is already planning the next stay.
Tuesday, June 24, 2014
I am blown away at Keaton's ability to learn. He is a perfectionist and gives up quickly if doesn't succeed the first time, but usually if we can get him to try something, or if it's a competition, then he is willing to give it a go. For the past two summers Keaton has taken swim lessons. By the end of last summer he was able to "swim" to an extent but not that well and he was using his hands to make him really go by pushing them on the pool ground. This past week he started swimming. He kicks his feet great and makes huge splashes. He uses his hands to "clear the water" in front of him and really is swimming. The struggle he has is coming up for air. He hasn't learned how to tread water so when he is really swimming he has to stand up to come up and breathe. Next week we start individual swim lessons for the season and I'm so excited for the lady to teach him how to tread water and how to come up to breathe when swimming like he does. Last year McKenna didn't do swim lessons. I can't remember why, but I assume she was sick. Our goal for her was just to get her comfortable with the water. She has had such a fear of water that she doesn't even put her face in the water when taking a bath, and she cries if it hits her face in the shower. Then a month or two ago she did it. McKenna put her face in the water in the bath. It was only for a second, but that second has turned into ten plus seconds, and now, if she is in the baby pool and standing, she will put her face in the water. I am so proud of her. This is a huge accomplishment for McKenna! It will be interesting to see how she does with individual swim lessons and I can't wait to see the progress she makes. My goal for McKenna is to get her to tread water this summer. Really just getting her in the big pool will be improvement too but I want the twins to be confidant in their abilities if anything ever happens and they fall in the pool.
This is it, the last week of summer school. I can hardly believe that it is has been a month of kindergarten for the twins. We prayed that they would get Mrs Calhoun after we were told she is the teacher that "pushes hardest" and we were thrilled when they told us she would be their teacher for the summer. McKenna hates school. She usually cries during drop-off, doesn't eat a lot at lunch, doesn't eat much at snack, and doesn't talk or play with other kids in the class. The twins don't sit next to each other in class because the teacher did assigned seating. That actually isn't a bad thing because this way they have each other if they are nervous or scared but they don't depend too much on each other this way. Although McKenna isn't a fan of school, she has participated. She brings home her worksheets and they usually are completed and she has tried to do the work. She has learned to write a few lower cases letters in a different/easier way. She has even started counting clear to 36, and occasionally remembers to say the number 13, which is the number she has always missed since she started counting. Before summer school, McKenna was able to identify all of her letters and write nearly all of her capital letters and most of her lower case letters. It is exciting to see that in the past three weeks she has improved what she already knew and has added to her tank of knowledge. She is talking more and seems to be more energetic at home. She has a great imagination and loves to make up stories while "reading" and has really been doing that more the past few weeks. She plays "teacher" and sings songs she learns at school and pretends to put kids in time-out and discipline them. She brings her stuffed kitty to school daily and when she comes home he usually needs spankings or discipline of some kind. It's adorable to watch. Keaton already knows the academic side of summer school academics. He went into summer school already knowing his letters and being able to write them and writing words. He knows phonics and can sound out a great deal of words and is doing well reading 1st grade level books. He can count to 100 and can add and subtract numbers 1-10. This week he came home and wrote 4+4+4=12. He amazes me with his ability to learn and to retain information so quickly. He is very competitive and all it takes is a challenge and he will try his hardest. The first week of school was tough for Keaton. He wanted to play with a little boy named Kyler that didn't want to have anything to do with Keaton. Keaton asked him to be his friend and the kid said no. The boy told Keaton his coloring was gross and his name was gross. Of course mommy bear came out and I wanted to talk to the teacher, but instead I told Keaton to tell the boy that hurt his feelings and to not talk to him that way. The next day he did just that and the kid didn't apologize but doesn't seem to be causing problems for Keaton anymore. At recess, Keaton plays with Marco, a twin in our neighborhood. They seem to be getting along great and having a lot of fun. Usually when I pick up the twins from school Keaton is asking to go swimming so he can see Marco, who he just said bye to five seconds earlier. So this is our last week of school and Keaton missed Monday and is missing today, Tuesday. I am praying they can go to school tomorrow and Thursday but we will just have to see how they are feeling.
Oh my, we are ready to come up for air and breathe at any moment but just can't seem to catch a break. In May, Keaton had an ear infection and nasty cough that turned into a sinus infection. A dose of antibiotics seemed to kick the cold and he was doing better until this weekend. Saturday morning he woke with a grumpy attitude and acting out of sorts. By the afternoon we were at urgent care with complaints of another ear infection - his fourth since March. The doctor prescribed him the same med he received in May, even though I told them it was the same medicine. Apparently an allergy to Amoxacillin really limits his options for antibiotics. Unfortunately, his cough has worsened and his fever returned to 101 so we took him back to the doctor yesterday. His ear infection has not improved - he has only been on the antibiotic for 36 hours - and his cough seems to be getting worse every hour. The doctor prescribed him a different antibiotic and scheduled us to see an Ear, Nose Throat doctor next month. McKenna did well going to summer school by herself yesterday, since Keaton was home sick. I was so impressed she didn't cry, although the second she got home she informed me she didn't eat her lunch and didn't talk to kids. When we picked her up she was rubbing her eye and there was gunk in the corner that kept reappearing every few hours. Started the eye drops last night and this morning she woke up with her eye stuck shut with gunk. Frustrated that McKenna has pink eye most likely. The drops we have are from last year and expired last month. Would love if they work without having to spend the ridiculous amount to get new ones. It is such a pricey medicine! Today we are suppose to take the twins to the dentist. Obviously that won't be happening. Hoping today with Keaton receiving honey hourly, and his inhaler every four hours, and his antibiotic three times a day he will find some relief from his coughing. Also hoping the doctor doesn't make us come in to look at McKenna's eye. Last time she had pink eye they said to just call next time because it is so contagious. Hopefully they still feel that way. We are ready for a house of healing. It seems the little ones have been sick one month after another.
Tuesday, April 29, 2014
The twins had their five year check-up yesterday and both got four shots in their legs. Keaton hobbled around all night and woke up this morning pretending to limp. Poor guy. McKenna's legs are bruised where the shots are given. I agree it is best to do the shots quickly to help decrease the anxiety, but if you poke the leg so hard it leaves bruises it would be beneficial to reconsider how you give the shot. Sigh. Keaton has had three ear infections in two months so we were able to discuss starting allergy meds for him. He started Zertec last night and we are hoping that will help him. He has a small cough again too which the doctor said could also be from allergies. Keaton is 22% on weight, 21% on height. He is 36 lb and 41 1/2 inches tall. He is a cute little guy and will no doubt climb in weight and height as he grows. McKenna was 21% height, 34% weight. She is 35 lb 6 oz, 40 1/2 inches tall.
This week has been more productive for McKenna then the past few months combined. Tuesday McKenna finally learned and mastered writing the letter "k". Wednesday she started her second gymnastic class and actually participated without crying the entire time, mostly because Keaton was in the class with her. She learned how to do summersaults at home on Thursday and "perfected them" to look like real summersaults on Friday. She got new braces for her feet and has done well wearing them almost all day long which is a huge help for her feet and legs. And to top it all off she has been playing in playland at recess, which she hasn't done once all year until the past week or two. We are so proud and thrilled with the progress she has made and excited to see what she learns this week.
Monday, April 21, 2014
What an emotional day! The twins had their screening for kindergarten last week and I was more nervous then they were and a complete wreck! I found myself crying several times during the process. Keaton was shy and scared when we walked into the building, but when I told him he could have the iPad if he participated his attitude changed. He responded well, answered the questions, and stopped fussing. The school's goals for kids is to see them score 70 or higher in all four areas. The screening process allows the schools to separate the children so that all the classrooms are "even" and the delayed kids aren't all in one room, and the overachievers in the other. Out of 100 points, Keaton's scores were: Gross Motor: 78 Problem Solving: 83 Language: 99 Self Help: 97 The fourth one, self help, isn't actually called that but I can't remember the title. It was the questionnaire complete on what he is able to do himself: get dressed, brush teeth, use bathroom, pour cereal into a bowl, etc. McKenna walked into the building semi confidant until mommy left her side and then she was a stressed out mess. She struggled to participate and kept asking for mommy and crying. Manipulation doesn't really work for McKenna, so promising her the iPad or candy didn't do a thing, even though the offer was given. Her scores were: Gross Motor: 4 Problem Solving: 13 Language: 26 Self Help: 10 After the screening took place we met with the principle and we were strongly encouraged to put the twins in summer school, especially McKenna. She feels that introducing McKenna to her kindergarten teacher before the fall, allowing her to understand a classroom setting and the school process will really help McKenna overall. So, mommy came home and signed them up for summer school and cried while doing it. It's five days a week, 7:30-2:30. That's a long time for them to be away from mommy. They are use to two days, and only five hours. While I do understand this fall that will be their schedule, I struggle making them do it sooner then is necessary. They have 12 plus years of school ahead of them, so I'm not sure summer school is truly the best thing for them. However, I do want them to be comfortable this fall going to school and it is comforting knowing the principle is going to try to assign them the same teacher for fall as they have this summer and hopefully this summer will allow them a better understanding of school routine and in a smaller setting. We were also encouraged to help McKenna build her upper body strength and balance skills. With her gross motor skills where they are they would really like to see that area strengthened and it apparently helps build all other areas of their education, especially with reading and writing. So in addition to signing them up for summer school they are now signed up for gymnastics. McKenna had her first class today and cried the entire 45 minutes. It was embarrassing and stressful. I hate seeing her so afraid of things and it shows me just how much I have babied her. Keaton was able to participate the last 4 minutes and we have switched them to a wednesday night gymnastics class that will allow Keaton to do gymnastics as well. He was so excited to get to join the class at the end of it, so he will no doubt love being in the class the full time. He was the only boy on the floor, so hopefully that won't bother him. McKenna still has her dance class too, on Tuesdays, and we will finish that out end of May. Hopefully between summer school, dance class and gymnastics this will really help McKenna to catch up. It will be fun to see the day when she is the top of her class and we are looking back to see where she has come from. Keaton is doing really well with most areas. He is reading books now. He can read small chapter books. He gets frustrated very easily and gives up quickly when he doesn't succeed the first time. That will be our biggest struggle with him and no doubt difficult to teach a child to not be a quitter. It's part of him being a perfectionist I assume. Keaton is very nervous about starting kindergarten and doesn't want to leave his pre-k. He loves the kids in there and he loves school. We are hoping once summer school starts he just loves it so much he won't want to have the month summer break before the real school year starts. Hopefully he will be joining karate soon, and basketball.
It took nearly five years, but a few weeks ago McKenna finally went underwater. Showers, swimming pools, baths are all very difficult for McKenna. She hates the water on her face and cries when we wash it. She started poring the water on her face from a cup in the bath, all by herself. And then within a week she decided she wanted to put her face underwater. It was only for a second or two, but she did it, and she was so proud of herself she kept doing it. She went to school the next day and told her teacher, Ms Jennifer, and didn't get the overreactive super excited response she was hoping for. Most people don't understand the difficulties McKenna faces or how far she has come. But for our family, we are so excited and proud of McKenna to reach this milestone. McKenna went to the foot doctor last week and they are switching her from her SMO braces to chipmunk orthotics. Due to the huge financial difference between the braces and orthotics, and because of how much easier the orthotics are to put on, we are really hoping that they will be enough supper to help correct her extremely flat feet. McKenna has had a slight wean from her tube feed. We usually give her one and a half boxes of formula and about three weeks ago we decreased her to on box. She seems to be handling it well. No huge appetite increase, but doesn't appear to have lost any weight and has actually gained a few ounces. We will keep her at this quantity for at least another month if not longer. We will be talking to her pediatrician this week for their five year check up and will be able to discuss with them at that point aha the best steps for McKenna would be to help continue tube decreases.
Friday, March 21, 2014
Our spring break was shared with a visit from Grandma Deb and Grandpa Bob. Our time was filled with fishing, kite flying, eating too much food, seeing Fantastic Caverns, watching The Lego Movie at the theater and we even went to Memphis for the weekend to see the family and celebrate Grandma Deb and Aunt Terri's 60th birthday. The kids did great and had wonderful behavior. You could tell they were exhausted by the end of the week though and they were ready to return to their usual routine.
So glad we took Keaton to the doctor for his rash, although it brought unnecessary drama. Apparently the rash was just from being sick, but they made us do blood work to make sure it wasn't a blood disease. In the process, Keaton was crying so hard over fear of the needle in his arm that his blood wouldn't come out, causing the nurse to leave the truncate on his arm over three minutes, which caused an extreme rash/bruising all down his left arm. It was awful and took several days to go away. A week after rash went away Keaton woke up with another ear ache and has blisters in his ear. We are on our third antibiotic in four week time period. Luckily it appears this one has helped but we will see how long. He also has the beginnings of bronchitis.
Tuesday, March 4, 2014
SERIOUSLY!? We are ready for a break. Keaton has gone to the doctor three times in past two weeks for sinus infection, cough, high fever, and ear ache. He is on his second antibiotic which doesn't seem to be working. He had a fever all weekend long. Says ear is better, but now the fever is back so obviously he is fighting something. Now this morning he woke up with a rash all over his body. Will be calling doctor to take him back to the doctor. Thursday we picked McKenna up from school and she was hacking and had a low-grade fever. We normally would let her ride it out, but she has been coughing so much it was hurting her belly (as if she had done a bunch of sit-ups) and it was making her head hurt. Glad we took her in; she has pneumonia. They put her on an antibiotic which took away the fever within a day or two but she still has a head full of mucus. Due to snow and ice storm Sunday, school was canceled today. I normally wouldn't care and would be grateful about the cancellation because it means more time with the kids, but the roads all look clear so it's a bit odd to not have school. Keaton wouldn't go to school today anyway because of his rash, but McKenna has actually been asking to go to school. Oh well, there is always Thursday.
Thursday, February 27, 2014
My oh my, it is exhausting to see little ones sick so often. The twins got sick in January and are still fighting nasty coughs. Keaton went to the doctor three times last week: cough (doctor said wait it out), fever 104.4 (sinus infection and on Rx), ear pain (ear infection, while on Rx for sinus infection). His cough is finally getting better, and no fever for over a week. McKenna's cough has hung around for weeks and Tuesday afternoon it seemed to intensify. Last night, Wednesday, she coughed continually and got little sleep. It's funny that the school rules are kids can go as long as they are fever free for 24 hours, or on Rx for 24 hours. Well, no fever, and no Rx, so she has been going to school. That's how germs and viruses are spread. At the same time, everyone else is sending their kids to school in the same condition, so I feel justified even knowing my kids are getting others sick. If I wait until they are cough free they will get the cough the following week. As this blog is being written, McKenna is doing a breathing treatment/inhaler for her cough and I am just crossing my fingers and praying that it helps cough a little less today. She can't seem to talk or move without coughing, and she is finally becoming a very talkative/active little girl so I really don't want to tell her to slow down, or to stop talking.
Monday, February 24, 2014
A few weeks ago I received a public school magazine with an ad to sign the twins up for kindergarten screening. The ad was cut and stuck to the fridge and each day I see it and get anxious at the idea of sending our children to school, all day, away from mommy and daddy and our teachings, and into a world where I have little control. When the kids were signed up for pre-K last fall I had a lot of anxiety attacks and was so stressed about how I would handle two 5-hour days a week away from them. Unfortunately, I have grown dependent upon them being dependent upon me. Luckily, those two days are filled with running errands, shopping, cleaning, taking care of the house and family and me time. It is my only time that is just for me, and Kyle has been amazing at not making me fill that time with tasks and activities but just letting me do whatever I want. Kindergarten will be 7 hours (I think) away from mommy, and while the time will no doubt be filled quickly, I struggle at the thought of going from full-time mommy to full-time house wife with kids away. A person can only deep clean, grocery shop, cook and organize for so long before they go crazy. Today was a big day. I called to sign them up for the screening. No, it wasn't the actual screening. That is still two months away. But signing them up made it more of a reality they are indeed leaving me this fall for school. I took a deep breath when calling to sign them up and when talking to the woman on the phone I actually got a little excited. Keaton lovesssss pre-k. He counts down the days to go to school. When sick, he cries because he doesn't want to miss. McKenna doesn't love school, but she has begun adapting. She loves her Tuesday class because she knows after it is dance. A part of her anxiety with school is the routine. While it is twice a week, that does allow several days at home before going back, so by Tuesday she just wants to be with mommy again. Kindergarten will be good for her to see Monday through Friday she has school. My prayers will begin today that God leads them to the right classroom, with the right teacher and the right students and friends. I can't wait to hear about their first day of school and all the friends they will meet and the amazing things they will learn that mommy hasn't been able to teach them. The next few months will be dedicated to enjoying every minute with the kids before they start the journey of school for the next 12 plus years, and hopefully I will be able to convince myself this journey is not about me losing my role as stay at home mom, but rather the kids learning their role as student, friend and amazing kiddos outside, as well as inside of their home.
Can't believe 2014 is already here and the blogging has greatly decreased during the past twelve months. So here are a few key things missed: The twins are in pre-k at James River. Keaton loves school. He is very social, gets in trouble often for saying potty words (poop, bum bum, toot) and calling names (dilah pants - whatever that means, and diaper baby). I walk the kids to their classroom each morning and pick them up in their classroom each afternoon, although Keaton asks that I just drop him off and let him walk to the room himself. He knows all his letters and numbers (counts to 100) and can write them. He loves practicing addition and subtraction and sounding out letters to read. He can read short stories and knows a handful of site words in addition to sounding out the words. He loves school and projects and challenges. He is energetic, funny and aggressive in life. McKenna has gotten better with school. She only cries for a minute or two when dropped off at class. She refuses to walk to class herself and insists mommy walks her to the room, which in all honesty makes me feel good. She loves art! She always wants to paint, glue, cut, draw or do anything crafty. She has grown a bit more independent but is still pretty timid and cautious about life. She is starting to talk a little bit to the other kids in class, which is exciting to see. She can identify most of her upper case letters, a handful of her lower case letters, and she can identify most numbers 1-10 (except for 6 and 9). She is working on writing and can write a few letters now (x, s, t, o, m, n and a backward c). We are working on getting McKenna to write her name. Her teacher, Ms Amber, said McKenna does a great job holding her pencil. Both kids are left-handed. McKenna started dance class in January. She is learning some ballet, but mainly it is geared to just get kids moving. It is amazing the impact it seems to have had on McKenna's interaction with other kids. There are six girls in the class and though McKenna doesn't really talk at all, she does follow direction and then she will show us little things throughout the week that she has learned. It was suppose to be just a six week class, but they have changed it to a monthly thing so we will most likely keep her in the class at least until school is done. It's just 50 minutes every Tuesday after school. Keaton always wants to play the IPad and watch television. This past month, in an attempt to get out of the house and do something fun we went bowling at a small nasty old bowling alley in Nixa. It was great. Nobody was there, it was cheap, and it smelled like ashtrays. Unfortunately, as we were finishing our game Keaton fell while walking up the handicap ramp and hit his chin on the bowling ball just the right place. His chin busted open and we rushed him to urgent care. He got three stitches. He was so brave! He cried at first but I think it was scarier for mommy then Keaton. The kids have been sick a lot this winter. In November/December the kids were sick for 5 weeks straight with fevers over 100. It was exhausting and frustrating. We started them on JuicePlus and that seems to have helped quite a bit. We ran out two weeks ago of their new vitamin and of course they ended up getting sick again. Grateful to have a new order in and hoping they will be free of their viruses soon. This back-to-back sickness caused us to increase McKenna's tube feeds back to previous amount 330 ml (quantity given for the past two years). McKenna was admitted to the hospital for a week in December due to constipation. It seems to be a guarantee that she will get backed up at least once a year. Thanks to Go-lightly and Enemas, they cleaned her out. The nurses were kind and rewarded her with toys for her bravery, including an American Doll, which Mommy has put away for future playing since they are so expensive and nice. A dozen of other things no doubt have helped 2013 to be an exciting and eventful year, but those were the main ones during the past few months. Cheers to 2014, and all we have to look forward to learning and doing.